Aware of what exactly?

Well, it’s Disability Awareness Month in Indiana, USA. Sound Bend, IN, network WSBT are raising awareness with a story about Sarah Schelstraete, who has Down Syndrome. It’s called Sarah’s Story: Hard at work despite disabilities. One thousand points if you can anticipate from the title what my major problem with the article was.

Now, impairments can make particular kinds of work, or work at all, difficult for people with disabilities, particularly when accommodations – be they ramps or particular lighting or a chair or whatever – are not provided. Leaving aside any accommodations Ms Schelstraete might utilise (it’s irrelevant and really none of our business) there’s no indication as to what impact her impairment might have that would make it hard for her to work at her job as the article title suggests. In fact, the article doesn’t tell us what her job actually is, but moving right along. Now, I’m not saying she definitely doesn’t have challenges related to her impairment, but rather that I have a problem with a particular narrative that this article taps into. This is a narrative that erases Ms Schelstraete’s individual situation, whatever that might be, in favour of conveying disability as something the poor dears must overcome! in their tear-inducing (to abled people) efforts! to live a normal life! which includes paid work!

Perhaps it is that push to gloss everything over that skews the narrative here, but let’s take a gander at the actual information the article provides. Ms Schelstraete is clearly a ‘dependable employee,’ as her supervisor Donna Martis says. She does her job well; interviewees are enthused about her being good at her job. There is not really a need, it would seem, to say that she is doing a good job in spite of her being disabled. She is good at her job. And she is disabled. Just like she is good at her job and a woman, good at her job and a daughter, good at her job and a resident of Indiana, good at her job and, I don’t know, maybe she likes detective shows or cupcakes or whatever. But time and again when disabled people are featured in the media, there’s a kind of shock that “those people” could achieve anything of worth – worth defined according to ableist standards around paid work, of course.

As such, I have a problem with wording like this in the article:

‘Martis said Sarah is a valuable employee who knows how to do her work, and requires little supervision.’

Or how about this?

‘Like any hard-working employee, Sarah knows one big benefit of having a job is making money. She often uses her paycheck to buy DVDs and CDs.’

Yep, just like everybody else – yet her competence must be uniquely examined and confirmed by all these people, despite her having been employed by the same laboratories for seventeen years. This is yet another example of the media trope in which PWD are achieving! through! the hardship! Would you like to know what a hardship is? For many PWD, sometimes more than our impairments themselves? Putting up with that condescending bullshit and fighting to be approached as actual people who should be approached with respect. Because handing out “well done!” stickers has nowhere near of the same value as does being treated like a person with things to offer.

These kinds of awareness-raising stories do little more than give abled readers/viewers/listeners a lift, a feel good story they can tuck away out of mind when they’re done. It’s easier for PWD to be a one-dimensional story, those people put there to light up abled people’s worlds with inspiration, prompting a whispered gratefulness that they’re not one of them. How about we raise some awareness of the social oppression attached to being disabled? Awareness ought to be raised about how many disabled people are out of work because, as Ms Schelstraete’s employment consultant Stacey Simcox says, many ‘don’t give someone the chance because they already have the mindset that they’re not going to be able to do the job even with the support’. About how disabled people so often are treated as though they’re being done a favour by being employed at all. About how work can be a struggle or impossible because of workplace bullying. Because of refusal to provide decent wages. Because employers won’t grant equitable working conditions or accommodations.

And let’s raise awareness about the valuation of work. There’s a nasty thread that runs through these kind of stories that holds disabled people to be societal leeches, a drain on resources. This kind of thinking defines human worth in terms of money, as though people are only good for how much money they contribute and how little they take from welfare or healthcare programs and such. It’s the kind of argument used against poor people who need that assistance, it’s the kind of argument that has led to women’s unpaid work in the home being so devalued. It’s thinking that tries to shame those who utilise thoroughly deserved government assistance, as though it doesn’t exist for a reason.

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8 thoughts on “Aware of what exactly?”

The ‘nasty thread’ that you spot I think weaves through (USian) society in general – this tying of a person’s entire value with their capacity for/desire to/whatever “work”. Without any discussion of what this really means, and what it says about how we treat other humans, we’re just perpetuating the poisonous discourse of work and value. I’d like to see an article that rejects the assumption that work = value as a person, and maybe consider the other things that make us human and, you know, valubale as individuals.

That’s precisely what this post is about, rejecting that assumption. For instance, ‘this kind of thinking defines human worth in terms of money, as though people are only good for how much money they contribute’. If you would like to elaborate, go right ahead – that’s what discussion threads are for – but perhaps you’d like to have another read of the article, because it’s in precisely that valuation of people that this post is intervening.

Meanwhile, I read in the US Census (from an article on Media-Dis-and-Dat/ that disabled people are twice as likely to start up their own businesses as non-disabled people, and that 15% are self-employed as compared to 10% non-disabled people. Also, there are 40% who are in home-based businesses.

Yes, capitalism and consumerism are some of the big forces here.

And the article came out more or less on World Awareness Day (March 21st 2010), and was heavily shilled by ARC.

(I admit I did like the part where Schelstraete said, “I’m the only person in this house who is working”.)

And there are questions like “What about unions? What about wages?”

The International Encyclopaedia of Rehabilitation covers much of a similar mindset. Actually the place is far more comprehensive than I first thought. Employment-related themes include Burnout, Employability and Self-Efficacy. And our old friend, Vocational Rehabilitation.

That’s exactly what they more or less told me in really nice euphemistic wording when I was given (was given!) work: that it was kind of a favour and an experiment and it also did seem to make the ones hiring feel very generous. Also I was paid less than half of a regular worker doing the same hours (so it’s always kind of infuriating when people go and say it’s ok for those developmentally disabled folks to go and be paid a pittance because they don’t do as much work or the work is kind of made up just for them or they’re still learning or whatever). And at the same time the accommodations were a laugh (didn’t even get what I need to make it to work), and thus I couldn’t keep it up, which is aggravating, since it probably reaffirmed all kinds of prejudices for the employers.

I also don’t need to work to feel fulfilled, I do a lot better like this actually, much happier. I would, however, like to make minimum wage at least.

And funny, yes, me and my mom ARE thinking of setting up our own business.

When talking about public welfare programs, my husband likes to ask: “Do you think if a person in our society chooses not to work, that the consequence should be death (say, by starvation or exposure)?” Basically he is asking whether a person has an inherent right to food and basic accommodations, no matter what their choices. The conservatives say yes fairly easily, but our liberal friends have a harder time with this question. It’s easy for them to say those who are unable to work should be taken care of – the assumption being that everyone *wants* to be “productive” and generate revenue for the state or nation. But is that assumption correct? I don’t think so. And I think even bleeding hearts can have a hard time not thinking about resources from a mindset of scarcity.

I’m training to be a Disability Equality Trainer. There’s been a lot of talk on the course of why we delivery equality training, not awareness training. It’s easy to assume that the two are roughly the same thing – but awareness ultimately doesn’t get you very far. The promotion of real equality in society is, instead, a move towards awareness OF something – of how far disabled people have to go before we’re equal members of society.